Privacy policy

Please read this privacy policy carefully.

To request a copy by post or email, please contact


Shine is committed to protecting your privacy.  This statement describes how Shine collects and uses your personal information in accordance with current legislation and best practice.

Shine (“we”) promises to respect any personal data you share with us, or that we receive from other organisations, and keep it safe.  We aim to be clear when we collect your data and not do anything you wouldn’t reasonably expect.

Developing a better understanding of our supporters through their personal data allows us to make better decisions, target our services more efficiently and, ultimately, helps us take action against the effects of spina bifida or hydrocephalus by providing information, emotional support, campaigning and a voice for all affected.

Shine will only send direct marketing communications to those people where we consider that there is a legitimate interest that they will be interested in the information or that they have explicitly stated that they are happy for us to do so via their preferred channel(s) (post, email, phone or text/SMS).

Our marketing communications include updates around our work, how to access our services and how to support us and get involved. Please fill in our short online form at or call us on 01733 555988 to let us know what type of communications you would like to receive, and your preferred channel.  We prefer to use email to minimise the cost of communications and so you receive information on a timely basis.

You may opt out of communications at any time by writing to Shine at 42 Park Road, Peterborough, PE1 2UQ.

1. Where we collect information from about you?



We collect information in the following ways:

1.1 When you access services or give it to us DIRECTLY

You may give us your information in order to join Shine and use our services, book on to an event, tell us your story, make a donation, participate in fundraising activities, or communicate with us.

1.2 When you give it to us INDIRECTLY

Your information may be shared with us by independent organisations, for example, the London Marathon or fundraising sites like Just Giving or Virgin Money Giving. These independent third parties will only do so when you have indicated that you wish to support Shine and given your consent. You should check their Privacy Policy when you provide your information to understand fully how they will process your data.

1.3 When you give permission to OTHER ORGANISATIONS to share or it is available publicly

You may have provided permission for a company or other organisation to share your data with third parties.  This may include NHS colleagues or local authorities

1.4 When we collect it as you use our WEBSITES OR APPS

Like most websites, we use “cookies” to help us make our site – and the way you use it – better. Cookies mean that a website will remember you. They are small text files that sites transfer to your computer (or phone or tablet). They make interacting with a website faster and easier – for example by automatically filling your name and address in text fields. There are more details in our Cookie Policy.

In addition, the type of device you’re using to access our website or apps and the settings on that device may provide us with information about your device, including what type of device it is, what specific device you have, what operating system you’re using, what your device settings are, and why a crash has happened. Your device manufacturer or operating system provider will have more details about what information your device makes available to us.

Shine websites and social media accounts may contain links to other websites. When you click on one of those links you are accessing a website that is not owned, operated or controlled by us or any of our affiliates. The operator of such a site may have its own privacy policy, which we encourage you to read carefully. The policy will govern the collection and use of your data on that site.

2. What personal data we collect and how we use it



2.1 What is personal data and sensitive personal data?

The type of data we collect and how we use it depends on why you are providing it.

Personal data is information that can be used to help identify an individual, such as a name, address, phone number or e-mail address.  

Sensitive personal data includes medical information and also all details of children under 16.  Particular care is taken when considering what sensitive personal data should be recorded and how it is stored.

We will only ever collect the information we need – including data that will be useful to help improve our service. The type and quantity of information we collect and how we use it depends on why you are providing it.

2.2 Members

We recognise that all members should be able to access our services in confidence and we are committed to this principle.

Shine has three specific types of Membership


  • Disabled members – those with spina bifida and/or hydrocephalus
  • Family members – this is a close member of the family including siblings and extended family members who support the member.
  • Associate members – professionals working in allied professions, i.e. medical, education etc. This may also include interested people who have supported Shine’s members, including former staff and committee members who sign up to become members.


If you are a member of Shine who accesses our services, we will usually collect the following information to enable Shine to provide an effective service to you:

  • Your/your child’s name
  • Your contact details (address, email address, telephone number(s))
  • You/your child’s date of birth
  • Information relating to your/your child’s medical condition, education or other needs

 2.3 Supporters

If you are a supporter of Shine, for example you fundraise, make a donation, volunteer, or sign up for an event - we will usually collect the following information:

  • Your/your child’s name
  • Your contact details (address, email address, telephone number(s))
  • Your bank or credit card details (if any transaction is involved)
  • Why you have decided to support Shine.   We will never make this question mandatory and only want to know the answer if you are comfortable telling us.

3. How we use your data

We will mainly use your data to:





  1. Provide you with the services, products or information you asked for
  2. Keep a record of your relationship with us
  3. Ensure we know how you prefer to be contacted
  4. Understand how we can improve our services, products or information.  Any statistical information given to third parties shall be produced in anonymous form so that individuals cannot be identified.
  5. To administer donations or support your fundraising, including processing Gift Aid

Other purposes include:

3.2 Direct Marketing and Information

We have reviewed the communications we send our supporters, including what we send, how we send it, and what the communication is about. 

If you are a member we will only contact you specifically about fundraising if we have your express consent to do so.  

For all our other supporters, we use legitimate interest as the basis for processing your data.

This means along with news and updates on our work, we may also contact you about four other things - fundraising, volunteering, events and trading. This is because, as a charity, each of these activities is fundamental to how we work, so we believe we have a legitimate interest to contact you.

Our forms contain clear contact preference questions and information on how you can change your contact preferences or opt out at from our communications at any time. If you don’t want to hear from us, that’s fine. Just let us know when you provide your data or contact us by any of the following methods:

  • Fill in the contact us form at Shine Charity
  • Call us on 01733 555988
  • Write to us at – Shine, 42 Park Road, Peterborough, PE1 2UQ

We do not sell or share personal details to third parties for the purposes of marketing.  But, if we run an event in partnership with another named organisation your details may need to be shared. We will be very clear what will happen to your data when you register.

For further information on the types of communications we may send under each of these categories, please see below for examples of typical communications, although note that this is not the full list:

  • Volunteering – we’d love to tell you about our volunteering opportunities so that you can get involved if you wish to help Shine with events, fundraising, administration and other activities that ultimately help people with spina bifida and hydrocephalus. We have comprehensive volunteering guidelines and are enormously appreciative of the people who choose to help us in this way.
  • Events – we’d love to tell you about our challenge events such as Ride London, the London Marathon or the Great North Run, all of which love you might want to get involved with. We’d also like to tell you about other opportunities where you can get join us for a fun day out, community fundraising where we can support you with your own events, or things like Shine Awareness Week where you can join in a whole host of activities and events to raise funds and awareness about spina bifida and hydrocephalus.
  • Trading – we’d love to show you online what you can buy. We’d also like to let you know about any special offers we might have – for example on our Christmas Cards.
  • Fundraising – your support is vital to our work and without you we would not be able to continue providing all our services to our members. We may ask you to make a donation, contribute to an appeal, upgrade your support or change its type. We may also ask you to renew or restart your support, and we may invite you to special supporter events.

In addition, we also want to keep you updated about our work, and tell you the latest news.

We will never contact children except where we’ve had parental permission to do so.

We also understand that additional care may be needed when we collect and process the personal information of vulnerable members, supporters and volunteers. In recognition of this, we observe good practice guidelines in our interactions with vulnerable people as laid out in our Vulnerable People policy.

Depending on your settings or the privacy policies for social media and messaging services like Facebook and Twitter, you might give us permission to access information from those accounts or services. For example, if we participate in Facebook’s “Custom Audience” program which enables us to display ads to our existing or potential supporters via Facebook. We provide personal information such as your email address to Facebook to enable them to determine if you are a registered account holder with Facebook. Our adverts may then appear when you access Facebook and on your Facebook feed. Your data is sent in an encrypted format that is deleted by Facebook if it does not match with a Facebook account. For more information please read Facebook’s Data Policy.

We may use desk research, profiling and screening techniques to analyse your personal information to create a profile of your interests and preferences so that we can contact you with information relevant to you or to help us find others like you who might like to show their support. We do this because it allows us to target our resources more effectively, which donors consistently tell us is a key priority for them. We may make use of additional information about you, including geo- demographic information and measures of affluence, when it is available from third party sources. We may on occasion use third party suppliers to undertake these activities on our behalf and provide them with your information to the extent required.

Such information is compiled using publicly available data about you, for example addresses, listed Directorships, social media posts, newspaper articles or typical earnings in a given industry. This helps us understand the background of the people who do or may support us and helps us to make appropriate requests for gifts to supporters who may be able and willing to give more than they already do and/or leave us a gift in their will. Collating this publicly available information helps us better understand your motivations and preferences enabling us to deliver a more targeted and relevant donor experience. Additionally, it enables us to raise more funds, sooner, and more cost-effectively than we otherwise would.

3.3 Sharing your story

Some people choose to tell us about their experiences with spina bifida or hydrocephalus to help further our work.  They may attend our events/events on our behalf, or allow us to share their story in the press and media. This may include them sharing sensitive information related to their health and life, as well as their contact information.

If we have the explicit and informed consent of the individuals, or their parent/guardian if they are under 18, this information may be made public by us at events, in materials promoting our campaigning and fundraising work, or in documents such as our Annual Report. We may also include this information in applications for funding.

3.4 Support for individuals affected by Spina Bifida and/or Hydrocephalus

Our services provide support to individuals and families affected by spina bifida and/or hydrocephalus and collect personal data in order to efficiently provide those services.

This information is managed separately from other data provided to the charity such as donations and activities.

Our Services team may collect sensitive personal data about your health or the health of your child when you speak, email or send an instant message to them (e.g. Facebook). They will use this information to answer your questions and give advice or guidance.

We may also collect and retain your information if you send feedback about our services or make a complaint.

3.5 Children’s Data

We will always seek consent from a parent/guardian before collecting information about children under the age of 16. This includes when a young person under 16 gives us their contact preferences and tells us they want to hear from us. Children under 13 cannot sign up to receive information from us.  However, we may contact children age 13 and over through their parent(s), or directly with the parent’s consent to make contact.

Our fundraising events have specific rules about whether children can participate and we make sure advertising for those events makes this clear and is age appropriate.

4. How we keep your data safe and who has access



Sharing Data and Breach of Confidentiality

We will only share your details in exceptional circumstances or where legally required, for example where there are allegations of abuse, or risk of serious self-harm or a serious intention of harming someone else.

We will never make children’s details available to third parties, other than when necessary as explained in other areas of this Privacy Policy.

We ensure that there are appropriate technical controls in place to protect your personal details.  For example our online forms are encrypted, our computer systems are protected and routinely monitored.

We restrict access to information that we hold about you or your child to ensure that it is only accessible by appropriately trained staff and volunteers who need to know the relevant information.

On occasions, we use external companies to process your details (name and address) on our behalf, for example to assist us with large bulk mailings such as Together  magazine. We do comprehensive checks on these companies before we work with them and put a confidentiality agreement in place.

Any personal information sent to external companies is always transferred in a secure manner and password protected. Password information is then provided separately. Such companies comply with all relevant laws applicable to the collection, storage, use and/or processing of personal data. They also maintain the confidentiality of all details processed on Shine’s behalf and have systems adequate to ensure their security. Any details provided are only used for the purpose for which they are supplied (e.g. to fulfil the mailing) and upon completion of the work all details are deleted and nothing is stored (in any format).

The Shine Health Home Delivery service is run in partnership with Bullens Health Care.   Contact data is provided to Shine Health Home Delivery to provide members with information about the service.   Bullens staff are honorary employees of Shine for the purposes of the contract and comply with all Shine’s data protection and confidentiality policies.

When we run residential events (e.g. our national conferences and family weekend), we may pass your/your child’s name and/or age to a third party such as a hotel or crèche provider, in order for them to reserve rooms/places for you/your child.

If you take part in a challenge event (e.g. London Marathon) for Shine we will provide the event organiser with your name and any other details they require in order to enter you for the event.

We may need to disclose your details if required by the police, regulatory bodies or legal advisors in the case of child protection or criminal activity.

We will only ever share your details in other circumstances if we have your explicit and informed consent.


  • Keeping your information up to date


We really appreciate it if you let us know when your contact details change. We will never use publicly available sources to keep your records up to date – you have a right to choose what information you provide to us and you don’t have to update your details if you don’t want to.


  • Your right to know what we know about you, make changes or ask us to stop using your data


You have a right to the following:-

  • To ask us to stop processing your personal data and, if it’s not necessary for the purpose you provided it to us (e.g. processing your donation or registering you for an event), we will do so.  
  • To ask for a copy of the personal information we hold about you. We will provide this information within one month of receipt of the request.  For complex or numerous requests this period may be extended by up to a further two months. If this is the case we will inform you within one month of receipt of the request as to why the extension is necessary. A fee may be charged for excessive or repetitive requests or further copies of the same information.
  • To ask us to delete/remove all information we hold about you. In some circumstances we can refuse to carry out this request – e.g. if we require your data in order to fulfil a legal obligation (e.g. Gift Aid) or if the data is processed to exercise the right of freedom of expression and information (e.g. safeguarding or complaints). If this is the case we will advise you as to why we cannot comply with your request.
  • To block/suppress the processing of your personal data. In these circumstances we are permitted to store your data but stop any further processing/use of it.

If you would like to access the personal information we hold about you, write to us at Shine, 42 Park Road, Peterborough, PE1 2UQ, enclosing proof of your identity and a description of the information you would like to see. We do not accept these requests by email in order to ensure that we only provide personal data to the correct person. If there are any discrepancies in the information we provide, please let us know and we will correct them. We will make any changes requested within one month of receipt of the request. For complex rectification requests this period may be extended by up to a further two months.

If you have any questions please call us 01733 555988 or e-mail them to For further information see the Information Commissioner’s guidance.

Changes to this policy

We may change this Privacy Policy from time to time.  This policy was last updated on March 2019. If we make any significant changes in the way we treat your personal information we will make this clear on the Shine website ( or by contacting you directly.

If you have any questions, comments or suggestions, please let us know by writing to Shine, 42 Park Road, Peterborough PE1 2UQ, or send an email to


Shine Cookie Policy

1. What are cookies?

‘Cookies’ are small text fines that are stored by the browser on your computer or a mobile device when you visit a website. They allow our website to remember your preferences and to tailor our website to your interests and needs.

Each cookie is a unique tag which allows us to see how many people access our site, how they use our website, and sometimes remember a user.  Cookies also helps advertisers provide you with relevant marketing materials.

You cannot be identified by the information gathered.

2. How does Shine use cookies?

We use cookies to enhance the online experience of our visitors, to better understand how our website is used.  Cookies may tell us, for example, whether you have visited our site before or whether you are a new visitor.

3. Your rights

Our cookies do not store financial or information which is capable of directly identifying you (such as your name and address).  You have the right to choose whether to accept these cookies. You can exercise this right by amending or setting the controls on your browser to reflect your cookie preferences.  However, please note that if you choose to refuse cookies you may not be able to use the full functionality of this website.

4. Changing your cookie preferences

The ‘Help’ menu in the toolbar of most web browsers will tell you how to change your browser's cookie settings, including how to have the browser notify you when you receive a new cookie , and how to disable cookies altogether.

5. Cookie terminology

We have classified our cookies into two broad types - ‘first party cookies’ and ‘third party cookies’:

  • First party cookies are cookies that are served directly by the website operator to your computer, and are often used to recognise your computer when it revisits that site and to remember your preferences as you browse the site.
  • Third party cookies are served by the service provider on behalf of the website operator, and can be used by the service provider to recognise your computer when it visits other websites. Third party cookies are used for a variety of reasons, most commonly used for website analytics or advertising purposes. More details are provided in the third party cookie section.

In addition, cookies may be either ‘session cookies’ or ‘persistent cookies’.  Your computer automatically removes session cookies once you close your browser.  Persistent cookies will survive on your computer until an expiry date specified in the cookie itself, is reached.

6. List of the main cookies used on our website

To help you understand how we use cookies, this is list of the main cookies set across our website and what each is used for:

Cookie name

Description and privacy policy

Cookie name(s)

Shine website

Persistent cookie, keeps track of the number of times a visitor has been to the site

Keeps track of where the visitor came from, what search engine you used, what link you clicked on, what keyword you used, and where they were in the world when you accessed a website

This cookie is associated with the AddThis social sharing widget which is commonly embedded in websites to enable visitors to share content with a range of networking and sharing platforms. It stores an updated page share count.














7. Third party cookies set by Shine

We work with a number of third party suppliers who set cookies on our website to enable them to provide us with services.  These cookies are mainly used for reporting and advertising purposes so that we can improve the way we communicate with our supporters.  More information about the main suppliers we use and their privacy policies is listed below:

Cookie name

Description and privacy policy

Cookie name(s)

Google Analytics

Google Analytics is a web analysis service provided by Google Inc. that enables us to measure how people use our website using cookies.

We use the information to compile reports and to help us improve the website. The cookies collect information in an anonymous form, including the number of visitors to the website, where visitors have come to the website from and the pages they visited.








Facebook is a social media platform we use to communicate with our supporters.


We use this website to provide an online version of our Together magazine, and any other publications.


We use Just Giving for fundraising and In Memory donations.  Just Giving uses cookies to perform key processes, remember user preferences and to record statistics such as length of time on site.




8. Cookies set by third parties

If you go onto a page on our website that contains embedded content, for example, YouTube, you may be sent cookies from these websites.

We do not control the setting of these cookies, so we suggest you check the third party website for more information about their cookies and how to manage them.

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